This last year of the pandemic I’ve not addressed some things I should have what with the many difficulties. Things have piled up and I’m trying to sort them out one a a time.
One thing is this issue with my toes. When I flex them it feels sort of strange, like they are “crunching”. Seems my walking has gotten wobbly and I’m wavering some from side to side. I’ve had a bit of pain at night, occasional and fleeting.
I’ve been reading about neuropathy and scaring myself. Recent fasting glucose is OK, mid range. A1c a bit elevated, working to get back on low carb diet.
Currently on 11 mg pred. Down from 13 3 months ago.
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Mstiles
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Yes, I will. Just had so many other issues requiring doctor visits plus other problems that I’ve been putting it off. Been really depressed and fed up with doctors. Thought I’d see what folks here have experienced first.
When I was first diagnosed, I also got fed up with the three doctors in my local practice. But after speaking to them fairly regularly (and swearing at one time!!!) it seems to me that perhaps they've been trying to find out much more about this horrible disease, and have become quite a lot more communicative. Good luck!
That sounds good. I last actually saw my GP face to face in 2016 and that was about my hip! He does talk to me on the phone occasionally trying to get me to take Alendronic Acid, we have an argument I think I have won until the next time!
I don’t thing he has ever bothered to check my PMR except to go on about bisphonates. He does say “crikey” when my CRP goes over 100, but has not come up with any ideas yet.
Well just had another ambulance trip to hospital after crashing in my home ,, doctors working hard very good and checked out with ct scan, but family doctors where are they,the only person working to see you is the hard worked nurse, oh well not a lot we can do about it at least the hospital doctors are seeing you and treating you
Yes I will. I’m trying to prioritize issues, seems like problems from head to toe now need addressing. More and different and new doctors required. I’ve been going through a rough patch and feeling overwhelmed. Just wanted hear of other experiences.
Pretty drastic hearing loss, tinnitus, joint (or muscle?) pain that moves around in shoulder, hips, knees, sacral joints, wrists, sometimes responds to Tylenol, finger locking messing with my drawing and painting, problems with constipation even after trying over the counter stuff recommended by GP, (sorry)!, (stressful also because of my son’s Crohn’s disease and surgeries), curling toes and wobbly walking, cataract that is getting worse needs surgery, and is hampering drawing and painting, shortness of breath at times. Fatigue and depression.
Managed to get to 11 after the last year at 13 but not sure if I should reduce further right now because pain. Never have gotten to 10 successfully.
I know this forum isn’t the place to go on about other ongoing stresses and problems of which there are many.
I have a good therapist when I can afford it. Without a rheumatologist since last year when my good one left the practice. Have appt. in two weeks with a new one to try out. My GP has been filling my pred without questioning me and I avoid the subject. She’s really busy, (only one issue talked about, maybe another briefly), and doesn’t seem to know much about PMR/GCA.
I’ve learned a lot on this forum, but right now at 78 I just feel overwhelmed and alone and fed up after 3 years of this and don’t know what to try to fix first. Any suggestions for untangling this and what to address first are welcome. There really aren’t solutions to chronic financial and family issues, just live with them at this point.
I think that lot is something to take to a good rheumy - because many of them could be associated with vasculitis, certailny with autoimmune disorders.
And actually - yes, this IS a place to bring them because PMR can be misdiagnosed or can be the forerunner of other autoimmune disorders.
I can empathise with you. Wobbly legs led me to MRI scan of my head, after two weeks of no news, I rang the surgery only to be told that they had the results and ‘no further action required’! Now what? All in the mind or medication side effects? A call from the surgery would have really helped.Good luck!
My physio ( who is a tonic incidentally) has given me a series of gentle stretching exercises including fingers and toes. After a very sedentary winter she has encouraged me to take daily walks. I had really become quite wobbly and unsteady on my feet. This is improving quite quickly. The stretches feel wonderful. Like a butterfly unfolding itself from a chrysalis. I think that I had become fearful of moving much with the attendant malaise. I hope something similar could work for you. I am also reluctant to bother doctors . Ours GPS seem impatient which is discouraging but understandable I guess. You do need to discount the nasties though.
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Feeling weak first thing in the morning.
Tapering - have I overshot?
one and tingling in feet
